Waffling

I think I have ADHD.
No offence to anyone that does or has a child with this condition, but I genuinely cannot stop at the moment.

I cannot stop moving.
I cannot stop thinking.

Many of you remember when I set up my "Fairy Stardust" business.
For 6 months, I researched, wrotes many notes, ordered business cards and began basic advertising.
It was fun while it lasted and gave us some extra money.
(I dressed up as a fairy and entertained children at parties etc).

Now after beginning work at endota and ABSOLUTELY loving it, someone has suggested that I consider setting up a motivational/inspirational talk with visual aids (eg powerpoint).
I could advertise to give talks at conferences etc.

Public speaking has never been a problem for me when it comes to nerves.
My entries on here have more than enough information to create a speech.

Please let me know what you think of this idea, constructive criticism and ideas are very welcome.

This week, I have worked 14 hours at endota.
The office is bright and uplifting.
People talk, smile and laugh.
You are "forced" to rest and take a break (because I am only working 4 hours a day, I argue it is not needed for me).
The employees are happy and positive.
Someone is always offering to go and get coffees from next door and I have already come home with two "presents".

While preparing gift vouchers today for Christmas orders, I found myself thinking about the 2 girls that originally established this company.
Two girls that were my friends at school.
As I looked around the office, I found myself feeling a massive sense of admiration.
Two "normal" girls that have created this amazing business that has franchises all over Australia.
I found myself feeling so proud of them and all that they have achieved.

Amelia has announced that she does not like me working.
"You should be staying home and looking after the animals" she said when I asked her "why?".
I have ensured that the hours do not interfere with either child at all.
10am - 2pm means that I am here when they go to school and also when they return.
The house may be a mess and I may only have dry biscuits to eat, but I am still personally here for them like I always have been.
Upon further discussion we realise Amelia considers me her stability.
Possibly with her deterioration, my constant presence is comforting to her.
Her relationship with Scott and Tom is just as strong and beneficial but she finds comfort knowing that I am always at home.

It is hard to explain to a child that staying at home and doing the same tasks every day, every week......over and over and over can become quite lonely.
The dishwasher, tidying the house, clothing washloads can become depressing.
I have been home every day for 4 years.
A lot of my friends would LOVE to do what I do.
.........And this is where the ADHD comes into it.
Over the last few years I have kept myself busy.
My positive feelings have been created from organising the house, seeing friends, cooking and even writing this blog.
Now I have been given the chance to be in a new environment that is happy, really happy.
I am recieving compliments and praise.
Two years ago I decided to devote myself to Amelia (and Scott and Tom).
The realisation that I would never work again hurt but Amelia was more important than anything else in the world and I wanted to enjoy every single moment with her.
But now I have been given the chance to work during hours that no one is at home with me......

I feel really good (and am going to sign off now because I am waffling!!).

xxx

Two years and our "Happy Place".

Today is the day that marks two years since we first heard the words " Ataxia Telangiectasia".

The exact day that we were told to "go home and cherish every moment with your daughter".
"She is NOT dying" they argued but "she will be lucky to survive to 20 years of age".

I will never forget that day.
The entire week living at our Royal Childrens Hospital was horrific enough, but that day is part of me now.......forever.

Scott HAD to come in for a formal meeting.

They had found something in all of Amelia's traumatic tests.

I was able to get some information before the meeting..........
 "It is not treatable and there is no cure".

That day was the most horrible day that I will ever encounter.

Many, many of you on here were with me......with us.
Not only in spirit but also online.......waiting.
Waiting to hear why part of her brain was missing.
Why she was deteriorating.

How I drove Amelia home safely that day, I will never know.
How I was able to see through the tears while driving still confuses me.

That is a turning point in our lives.

Not a small one.
A VERY big one.

In the past two years so much has happened.
So very, very much.

Through these "blogs" you have travelled this journey of sadness, devastation, happiness and enlightenment (and not in a religious sense).
You have all celebrated Amelia's achievements and helplessness.
You have witnessed her intelligence and profound statements.

2 years.

Two years of learning that everything can change in a minute.

A normal life can suddenly become one that is sacred.

Amelia has gone from someone that walked out of the hospital that day.........to someone who can no longer walk "one step" without full support.
Two years ago she was walking (and running) around with AFO's (plastic leg supports) on her lower legs.
Now she needs a wheelchair.....constantly.

Two people are needed to shower Amelia, one to toilet her and one to assist her do anything else.

We featured in a newspaper, magazine and on television.

Amelia's Project was established and gala nights and numerous fundraising events eventuated from this.

Many of you have told me stories about how Amelia has changed your lives.
The photo's, the laminated drawings, the positive quotes.
Items that you have kept to remind you that everyone is entitled to an "amazing life".
Your own realisation that life can change....or end, quickly.

We travelled to Disneyland in America and were able to convert a van, suitable for an electric wheelchair to drive into.
The bank account also leaves us enough money to pay for therapists for at least another two years.

We are very lucky.
But we are also not...........

Recently we embarked on a new journey.

"No regrets at the end" will be the name of my novel.
Many of these "blogs" will be part of my motivational speech.

A few months ago it was time for a new pathway.
Amelia will always have Ataxia Telangiectasia, but our whole family needed to approach our lives differently.

Amelia deserves an "amazing life"....but so do Scott, Tom and I.

Negative was replaced with positive.

Many things I am unable to mention here but there is also some things I can.....

Scott has lost 24 kg.
I have lost 14 kg.
Amelia is now at Special School full time.
Everything has fallen into place for 6 year old Tom.
Tom is mature beyond his years, extremely clever (yes. I am biased) and very tolerant with Amelia's extra needs.
Amelia has become confident, demanding and opinionated. She argues with me and gives me a list of demands constantly.
I LOVE IT!!
Scott and I are a lot more energetic, positive ........... and happy.

I can genuinely say that we are all the happiest we have been in a very long time.

As someone said to us recently "You are in a really, realy happy place right now".

Today as I drove to my first work day at endota day spa head office, I had tears in my eyes.
They were tears created by nerves.
I then experienced the most wonderful, positive and powerful day.
On the way home I had genuine tears....of happiness.

Many of you will be shocked to know that I actually wore "fashionable" clothes!
A black, knee high dress.
Knee high black boots.
A slim fitting black jacket to the waist and......
a silk scarf around my neck.
Yes friends, I went all out !!!
(maybe make up next time!).
This suburban chick drove 1 hour into the city, had to actually find the suburb of Hawthorn and eagerly worked 4 hours.

Later in the day I recieved the comment that I was "extremely enthusiastic".
Personally I know that I had verbal diarrhea.
I was very, very nervous and excited !!!
But I will accept extremely enthusiastic !

I answered phones, handled emails, printed gift voucher emails, studied the products and began researching my future endeavor....the child care centre.
After a very informative talk with the endota "legal" representative, I feel extremely confident to begin the many pages of paperwork to ensure this happens quickly.

When I returned to my  "home environment" the enthusiasm from Amelia and Tom was just as enjoyable.
"How was work mum?" , "What did you do mum?" , "Was it fun mum?".

And as I finish this very looooong entry, I would like to tell you about Amelia's new wish.

Her favorite movie is "A Dolphin Tale".
It is a true story about a dolphin in America that is found in the sea with a fishing net wrapped aroung it's tail.
The dolphin conservation centre in Florida "rescue" it and regrettably have to remove the dolphin's tail to save it's life.
They named it Winter.
The pressure on it's spine, with no tail to swim, means that it is doing irreparable damage to Winter's spine.
A doctor fitting prosthetic limbs to army soldiers, makes a prosthetic tail for Winter (after many attempts).

Winter has her own website, webcam and long line of disabled people coming to meet her.

Amelia WANTS to meet her.

So welcome to my new goal for Amelia.
In 2014, I aim to get Amelia to Florida to meet Winter the dolphin.
We will most likely contact "Make a Wish" about this.

Tom on the other hand was very disgruntled that Amelia gets to "Make a Wish" and he does not.

Hoping for a happy ending I said to Tom "Ok. What is your wish and I will try to make it come true".

Excitedly he rubbed his hands together and said "To one day drink as much Pepsi Max and Powerade as I like".

I think we can make that wish come true !!

xxx

Happiness

Really, really happy right now.

I always approach "these times" with trepidation but so far we are all still traveling along this road of contentment.

Scott, Amelia, Tom and myself are genuinely happy and content.

I know what the future holds for us, I am watching it slowly happen in front of me.

BUT we are enjoying the here and now..........SO MUCH !!!!

There is absolutely no use sulking and worrying about the future when we have the here and now.
I can honestly say that these feelings have been occuring for two months now (for all of us), so that is good !

The loss of weight on Scott and my part has made a massive contribution on our parts.
We feel happier.
We feel more energised.
We feel more motivated to LIVE life.

Tom is always happy, so he has NOT changed.

Amelia, on the other hand, is very different.

Amelia is happy, content and full of spunk.

I LOVE IT !!!!!!!

She is quick with her "one liners" and her ability to tell you if she does or does not like something.
She is very, very vocal constantly now.
Amelia has a list of "jobs" for me constantly and hassles me until they are completed.

I LOVE IT !!!!!

Amelia and Tom are "getting along" famously and the laughter from the 2 of them is wonderful.
The opposite now happens than previously.
Amelia "cracks it" and complains....................... while Tom adjusts and is co-operative.

Just now (while I am typing) my brother, Stuart, arrived to play with Tom.
Regularly they play "kick to kick".
Amelia was very vocal in telling him that "you always play with Tom and not me".

LOVE IT !!!!!

The enthusiasm for Christmas is also contagious.
Many of you may remember that Amelia wanted all of our decorations set up when we returned from hospital, almost 2 years ago.
We had just returned from "the diagnosis of all diagnosis's" and while Scott and I are trying our best "to hold it together", Amelia wants to decorate for Christmas.
Last bloody thing we wanted to do.

Anyway, she is looking at the junk mail constantly and with her new shopping addiction, finding what she wants to purchase.
Thankfully, explaining that we do not have the money is enough to subside her obsession to SPEND !

Today, my glorious husband, sold his treasured motorbike.
Our new life means we need only the money, but also his heart beating.
He is also selling HIS car.
Now we have the wheelchair accessible van and a "yuppy" 4 wheel drive for equipment, we no longer need his sedan.

But we have a saying in our house.
It is used constantly.
"Get over it" and "Move on" are used a lot.

As my Scott loses all of his "prized possesions" the kids and I have been heard to giggle while muttering these words.

Finally........
The $14,000 Communication Device came home on Friday.
I was extremely sceptical on how it could help Amelia communicate, but I can honestly say, I am converted !
Internet, communication and camera.
The staff at Amelia's special school have worked so hard on it for the last 4 weeks.
When we press about "Amelia's brother" it says "My name is Tom. I am a little bit crazy" !!!!!!!

Love, Love, Love it !!!!!

Make the choices that you need for your own life.
It not only makes you so much happier BUT it is so, so important.

xxx

Photo's !!!!

 

After writing my latest update yesterday, I forgot to include all of the photo's I had chosen !!!!

 

The first one is of Scott and I, sitting in a taxi, on our way our for a "grown ups" dinner and drinks.

For the first time in approximately 4 years, Scott and I stayed in the city and the kids stayed with Nana and Poppy.
Here we are having breakfast !

As part of the "huge overhaul" of our house, Scott and I were working hard outside cleaning up the backyard.
This is how the kids entertained themselves !!!!!!

This beautiful, happy face (and laughter) is a regular occurance now.
Reminds us how very special every single second with this child is......

This is Amelia and Nutter ......(sorry Honey !).
She is much bigger than this now!
She was originally bought as a companion for Amelia, but I would say in the last 2 months she is definately a best friend for Tom.
Their energy levels, personalities and love of life are perfectly matched.
Every night after school, Tom cannot wait to go outside and play with her.

Our beautiful Amelia after the gorgeous Jade did her hair.

Amelia has decided to "create" an area outside.
Here she is at the design process (something she learnt at special school).
It already has butterflies hanging and now we need to purchase comfortable chairs and a table.
The area is under a gorgeous tree.

And here is Amelia's new electric wheelchair.
The fantastic "license plates" are courtesy of Nikki and Belinda.

Thank you for all the extremely kind messages about the blog written below.
I enjoy sharing the highs and the lows with you all.

xxx

Hello !

Hello.
Where do I possibly begin?
It has been 5 weeks since my last confession ....... sorry, blog ...... and so much has happened.

I will begin with beautiful Amelia.
She has changed.
Like really, really changed.
Since she has settled "full time" into the special school, she is so happy now.
Like really, really happy.
She declines ALL days off school.
And she laughs uncontrollably ALL the time.
Quite often we look at her like she has "lost the plot" and this only makes her laugh more!
The transformation has been MASSIVE.
Amelia can still be grumpy, moody and sad but breaks out of it a lot quicker than in the last 2 years.
We have also changed the way we handle these situations.
She has been told to "move on" on numerous occasions.
No more wrapping her in cotton wool.

But the laughing, the wicked sense of humour and the discussions (from her) about happy times years ago has been mind blowing.
She is also appreciating happy times NOW.

And Tom.........
Well he astounds us everyday with his vocabulary, reading, writing and number capability.
He loves all of the above and enthusiastically "practices" it all constantly.
His social skills and general behaviour have improved beyond belief.
Tom has matured greatly and for someone who is only 6 years old we are so very proud.
He still has his "moments", but they are nothing compared to what they used to be.

Scott is really good.
He has lost a massive amount of weight, has SO much more energy and is definately appreciating every minute of every day.

And finally ...... ME.
A lot of soul searching in the last few months.
Why defining all of the positives and negatives in MY life, I have discovered so very much.
Instead of constantly complaining about my weight, I decided to do something about it.
In the last 6 weeks, I have lost a total of 12 kgs.
I participate in personal training, eat healthy and have changed many of my attitudes to "life".
Because of these changes it means I sleep better, wake up easier, have no more headaches and never feel "sluggish".
It was a massive commitment though.
I only eat salad, vegies and 100gm of meat/seafood.
NO caffeine, carbs or sugar.
There have been times when I "caved" but once I feel the after affects, I return immediately.
I plan to lose a lot more weight.

My soul searching has recently meant that I have also lost some friendships.

I am not ashamed to admit that I hit "rock bottom" emotionally when it happened.
I have never lost friends, especially never in a nasty way.
It is an episode that will stay with me forever and I will always still hold those people close to my heart.
But as the poem goes, maybe those friends came into my life for a reason or a season.......

Overall, we are happy.
Our house has been given a mass overhall.
I will be starting a new job soon.
Amelia is extremely content.
Tom is very well adjusted.
Scott is appreciating life.
And I am grateful.
I am grateful for grandparents, siblings, friends and for all the people that surround us and make every minute of every single day special.

Promise to write more often from now on.

xxx

Points Finale !!!! (Thank Goodness)

I am now bored with my "points"and will now be presenting the GRAND FINALE !!!!

It appears all "old news" to me now and I want to move on !!!!!

Scott has travelled through a more intense realisation of our current situation recently.
He is fine and not in the foetel position in the corner BUT the sadness of Amelia's deterioration has overwhelmed him on a few occasions recently.

We all have moments of realisation and they really hurt, but also get to the end of the tunnel and find sunlight....... until the next tunnel.

We have all really enjoyed the school holidays that have just ended.
Scott was working but enjoyed hearing the stories of our day (and happiness) when he came home.

And finally, Amelia's Project.
After an incredibly successful 20 months, Amelia's Project no longer has a Committee.

After creating a group so powerful and mind blowing, I told the Committee I wanted it to end now.

My energy needs to focus on Amelia and my family now.

We will be eternally thankful to Jemimah, Michelle, Cindy, Belinda and Donna.
They all worked so very hard to help our daughter, and effectively us, and there is never going to be a way to thank them enough.

Belinda and Donna now oversee the Amelia's Project bank account and I give them any receipts we have accumulated.

At this stage there will be no more active fundraising for Amelia's Project.

In the future this may change, but for now we are so humbled by what was achieved and the love and friendship that surrounded us over an incredible 20 months.

I am very happy to say that THIS blog and the Amelia's Project page on facebook will continue.
I need my therapy through writing and respect your interest in hearing of our good and bad days.

xxx

Continuing the "Points"

Amelia has had 2 dangerous falls recently after just waking up.
The ability to get to our bedroom to assist her with the morning toilet stop is no longer safe.

We were advised to purchase a "monitor" from Toys'r'us that allows for two way communication.
It also has a camera on Amelia's end and a TV screen on our end.
Excellent for $160.

As well as being a "fun toy" for the kids it is also effective in making sure she does not get up alone.

A few weeks ago we had a fun wheelchair party to celebrate the arrival of the new wheelchair and the new car.
Some of our closest friends attended with their children.
Amelia admitted at the end of the night that she struggled to watch all of the children "playing".
Even though Scott and I felt like we had failed we understood that we needed to take this knowledge and remember it for the future.

Recently I had a discussion with Amelia about what to do when we get together with other people.
I explained that "she may have A-T but it does not mean she cannot find her own fun. The fact that she has it, is what it is, (harsh I know) and she needs to work with it so that she prepares and and can think up ideas for her own fun.
Take the dog to the park and be in charge of it.
Play chasey on the chair.
Tow kids on skateboards and rollerskates.
Get out a game that can be played at the table.
etc  etc etc etc.
Amelia (and us) need to think of ideas of activites she can participate in.
Scott and I are taking all the blame after so many situations seem to fail.
I want to put some responsibility back on her now.
Stopping and smelling the roses can open up so many doorways for happiness.

Now while moving down my points (about 3 entries ago) I would like to talk about Tom.
These holidays I have seem him hand feeding Amelia her toast because she has become too tired to do it herself (I was in the kitchen packing the dishwasher).
His patience has recently excelled (towards Amelia only) and nothing appears too annoying or difficult to help her with.
Tom is also realising that Amelia is someone he can still play with.
He has also realised that she laughs at his jokes !!!

Tom has an amazing ability to calculate number.
The adding up and subtracting he is able to achieve in his head is mind blowing.
He is also teaching himself the "times tables" ??!!
Amelia, Tom and I went to the movies today.
 He had a movie voucher to the value of $12.
Straight away he said
"You won't need to pay $36 now mum, just $24".
At the bakery when 2 loaves of bread came to $7.40, he saw Scott give a $10 note.
"You will get $2.60 change dad" he said before it had been calculated by the register.

Anyway as another School Holidays comes to an end, Scott and I are going to watch some favorite TV shows.

Have a good weekend everyone.

xxx